Summer 2012 RADS HANG OUT

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  • Januaryice
    Januaryice Member Posts: 120
    edited July 2012

    Tina - I also meet with my RO on the 17th and am very anxious to get started with rads. I'm trying to come up with a list of questions for him. Anything special you're going to ask him? Open for suggestions.



    I also agree I have a lot of confidence in my ONC and just hope I feel the same about my RO. I only met him once when this journey started in February. All my other doctors have been female so I hope that would make a difference. There were only three male RO on the team and no females. Does anyone have a female RO?



    Hope everyone is enjoying their weekend!!!!

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Welcome Tina. I have my last chemo this wed then RADS so I am hanging out until then. We have a couple ladies who have started who can likely answer your quesrion.

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    Hi tina, welcome.  I am doing the same thing you are.  I finished my neoadjuvant chemo on June 25 and i have my lumpectomy on July 23rd.  I expect to start my rads a months or so after that.  There are lots of people here to support you! 

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    Thanks guys.  This will be my new favorite place to hang out.  Oddly I have already met my RO team because my Dad dealt with prostrate cancer a few years ago and went to the same place I will be having my radiation.  That is reassuring because he had such a positive experience with them.  I don't have questions yet but I will sit down when my head is clear and right an entire page, like I do before most of my doctor's visits.  I know there is one woman and two men on the team but I don't know who I will be seeing next week.  My biggest concern right now is asking about skin care.  Other than that I have no idea what questions to ask.

  • slak
    slak Member Posts: 179
    edited July 2012

    Tina - I did surgeries first, then chemo, then rads.  I'm more than half way through rads and for me personally rads are way easier than chemo.  It's just a pain getting there everyday.  You'll do fine!

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Saw my RO right before my lumpectomy. Then saw him again on Thursday, 2 weeks PFC.  They did the mapping, etc. at the time of appt.  I was surprised. Saw my MO today at the gym and asked her about the bloodwork.  She said just to come in on Wednesday before my Thursday Rad appt. and she will look at the test results.  Kind of weird that I ran into her at the gym.  Karma. I really didn't want to have to wait until Monday to get in touch with her.

  • slak
    slak Member Posts: 179
    edited July 2012

    Karen - glad to hear you had good karma!  We could all use a little of that!

    Well, after 17 days of rads I have a red rash in the rad treatment area.  It looks like it might hurt but it doesn't really.  I'm continuing with the aloe twice a day, but I don't think this is going to go away until I'm done with treatment.  I have 5 days of whole breast rads left, and then I do the 8 boosts (which the tech told me is the same dose as whole breast but just to the lumpectomy area).  Therefore I'm hoping that I can go 5 more days without the rash/redness getting much worse (it is worse in the non-lumpectomy areas).  I am so looking forward to an end to bodily injury! 

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Sorry to hear about the rash Slak. Hope it holds up. I really understand the term "bodily injury". I heard myself saying recently that bc treatment is about being injured repeatedly. My last chemo is Wed so I'll be joining you in RADS soon enough.

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    I was explaining to my family how the good outweighs the bad when it comes to treatments.  We have to be able to put up with the annoying side effects in order to work toward the goal of being cancer free.  I am still experiencing some of the annoying side effects from chemo and I finished on April 24.  My nails are still a mess, my feet still don't feel right...  I hope the rash goes away, Slak and that it continues to not hurt.  It looks like you are half way there!  Keep your eye on the prize!

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Sorry to hear about your rash, Slak.  I have had a rash off/on ever since my second chemo treatment.  It's very annoying.  Looks like hives, but comes and goes. At lest it doesn't burn or hurt.  Let me ask my sister about it (she's a radiation tech) to see what she has to say about it.

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Hi All, I've been over at July Rads. I started RADS last Monday 5 done & 28 to go. I see most of you here have had Chemo. My ? Is how did you deal with the Nausea. 16 hours from the start of my first RAD treatment that is what I am dealing with. They gave me Zofran & it does pretty good but makes me tired on top of already feeling tired from the RADS. Yeah you read right I am nauseous they said every once in a blue moon someone gets it from the start & it happens to be me. My fair skin is already showing pinkness, itchy & aches too. But it's the nausea that's by far the worst, as I don't want to eat or drink much. It was thankfully a little better over the weekend.

    I hope everyone who has started has a good week & minamal or no SE's.

  • slak
    slak Member Posts: 179
    edited July 2012

    Thanks everyone...I'll keep you posted on the rash and what my RO says.  It has now started to itch a little.  I really hope it doesn't get worse...

    Welcome Julz4 - funny you mention the nausea...I have had it the last couple of days but first was blaming it on taking a multivitamin on an empty stomach and then blaming it on the Tamoxifen.  Now you make me wonder if its the rads.  Here's where doing rads and taking Tamoxifen at the same time causes confusion.  However I'm not going to stop either so I guess it doesn't matter what's causing it.  I find eating a little something like crackers helps me.  I really don't want to take more meds, though I do have compazine left from going through chemo.  I would only use it if I got really desperate.  I hope yours goes away!

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Julz - wow never heard of anyone getting nausea with rads!  Maybe you can take the same pills they gave us for chemo?  Do you eat before you go?  Maybe having a small protein snack before and after would help the tummy?

  • slak
    slak Member Posts: 179
    edited July 2012

    P.S. For those who have not started Rads, in retrospect if I had to start over I would start using Miaderm from the beginning.  I felt I didn't have sensitive skin so could just use Aloe, but now I'm regretting it.  It's too late for me, but just thought you might want to know because I think you need to order it from the internet.

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Slak & Onvacation....apparently it's not something that happens often.  But usually shows up a few weeks into it.  My DH said one of the Techs said she had only ever seen 2 people ever get nausea from the starting gate.  I was one of them.  The first few days were really bad.  I have Zofran for it.  But am only taking when really bad.  Eating something light does help some & gingerale too.  But I also have gerd so it's a catch 1-22 as soda makes the gerd-acid reflux act up.  I take nexium but that doesn't help with the nausea at all.  But prevents the nasty heart burn I get. 

    Onvacation....I work nights so when I get home in the morning I run into the shower & then to RADS (7:45 am).  I don't/shouldn't eat before bed as that makes the Gerd worse. So as soon I get home I am off to bed.  At least my RADS nurse didn't hesitate to get me something for the nausea ASAP!  

    Slak how many days do you have done so far?  How many to go?  

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Slak, onvacation and Julz:  I start this Thursday.  Thanks for the heads' up.  Where do you get Miaderm???

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Slak:  I talked to my sister and she said you might be having an allergic reaction to either the rads or the aloe.  She suggested just using olive oil.  There is nothing in olive oil--it's just vitamin E, no perfumes, no additives.  She said to use extra virgin--it's thicker.  Just buy the cheap stuff.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Slak:  Again, the olive oil can be mixed with aquafor.  My sister has been a radiation oncology therapist for 34 years.

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    kjliberty - what a great resource to have her as a sister!  I have my mapping and simulation appt tomorrow so hope to get a start date!

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Kj.....ask your sister if she has ever come across anyone getting BC RADS that ended up having nausea.  Some say it can happen & others say no way!  I'm thinking I am more susceptible because of my Gerd.  I sure didn't see this happening.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Julz:  Sorry about that.  I did ask her just a few minutes ago when I was on the phone w/her (she lives 450 miles away).  She works in a HUGE hospital--the largest one in Michigan, and she said she has never heard of anyone getting nausea from radiation.  Maybe it's the GERD, I didn't ask her about that.

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Onvacation good luck with your simulation!  It was easy for me....although I wasn't a lover of the Tatoos.  I'm not a wuss about it but I don't like needle sticks.  I thought it wouldn't hurt.  I did feel mine & wasn't prepared for it.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Julz:  I got marked up with a sharpie and clear tape was put on.  Hopefully, it will stay on til Thursday. If not, I have to go back it.

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    Thanks Kj.....I know it can happen for different areas of the body getting RADS.  But not for BC usually.  Although I wonder with my Gerd as I did have to have my esophagus ballooned to open it last summer due to scaring.  Also the nurse was surprized by it but didn't think it was unheard of.  Oh well I had a feeling I wasn't gonna sail through all this with out some hiccups!  I hope this is the worst!  I deal with it....but don't like it.  But then who does!

  • julz4
    julz4 Member Posts: 2,490
    edited July 2012

    No Tatoos!  Good for you!!!  Well I will catch up another day as I have to go to work & am on for the next 4 nights off 1 then on 2 more!  My LONG week!  Good Night! Take Care & Thank You for asking your sister Kj!

  • slak
    slak Member Posts: 179
    edited July 2012

    Thanks for the info Karen!  I think my response is due to the radiation and not the aloe because you can see clearly the treatment field because of the rash.  I slather aloe beyond the field and I don't see the rash there.  I hadn't thought of using olive oil!  I was given a list of things I could use and it wasn't on the list so I'll ask.  Some of the other ladies on other threads who have gone before us have used the Miaderm (which apparently is formulated specifically for radiation skin issues) and said it worked for them (and it was on the list I was given though my paperwork says there isn't evidence that it works).  It has Calendula, Hyaluronate and Aloe in it which apparently have all shown to work individually in clinical trials to reduce severity of radiation-induced skin issues.  I googled it and it can be ordered through the company (www.miaderm.com).  The site also lets you find if there is a local distributor.  I put my state in and would you believe the place that I get treated is the only distributor in the state?  No one ever told me I could buy it there.  I will see if I can pick it up tomorrow (better late than never).  I'll also follow up on the olive oil when I meet my RO again on Wed.  I don't know if everyone else does this, but I have a calendar where I cross off each day of treatment so I can see how much closer I am to being done.  It shows me how much I have already gotten through (surgeries, chemos, rads, etc).  I am getting close to the end (13 of 30 rads left).  We can all get through this together!

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    Karen, one of my work friends gave me post-it notes for my chemo countdown.  She wrote numbers on them 1 through 8.  I hung them in a prominent place in my house so the whole family could enjoy watching the numbers get smaller after each treatment.  I was so happy to rip off the last one.  I think I will do the same thing when I start rads.  It was a mind game that really helped motivate me!!!  Let me know if you think the Miaderm helps.

  • janiemomof2
    janiemomof2 Member Posts: 52
    edited July 2012

    Hi all... just catching up with everyone's posts.

    Julz - I had nausea with rads and I haven't started my tamoxifien yet so I brought it up to my RO and he said it can happen though it's not usually the number one complaint he hears. He also said that folks often chalk it up to something else but that it can happen with rad tx.

    Hair! I have the slightest little bit of hair, not bad for 6 weeks PFC and it makes for really easy showering after the beach :P

    Rads rash - ugh. I have it. It reminds me of sun poisoning. I've been putting stuff on it but honestly I think the body just needs time to heal..... WHICH - it will have plenty of because ---------- I HAD MY LAST RADS TODAY!!!

    Happy Dance!! :)

    Wishing everyone minimal se this week <3

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012

    YAY YAY YAY, JANIEMOMOF2!!!!!  Cool  Happy Dance is definitely happening in your honor!!!!

    Many, many hugs to you and yours!!!!

  • slak
    slak Member Posts: 179
    edited July 2012

    Woohoo Janie!!!!  CONGRATULATIONS!!!!!  We are all so happy for you!!!!

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